Category: Ehlers Danlos Syndrome

There is already evidence that the environmental movement is “a site of exclusionary practices including racism and sexism” (Fenney) and there is increasingly evidence of ableism. This matters because any exclusion may reduce the effectiveness of the movement to achieve its goals.

As a note, I’m saying environmental movement but am aware that it’s much more complicated than the phrase sounds, that its made up of different groups with different approaches and different strategies. However, any part of the environmental movement would benefit from considering whether they inadvertently exclude any groups.

There are barriers to certain aspects of sustainable lifestyles, pro environment activities and activism and Fenney suggests that “there are particular features of the British environmental movement which may exclude disabled people”.

Barriers include physical access to meetings, protests and conservation sites. A lack of accessible information as well as a lack of information about accessibility. Increasingly websites are relied on for information and these are not always accessible and accessibility information isn’t always up to date. Financial and social barriers play a factor as well, with the latter that might be being dependant on the help and kindness of others who can refuse, as well as attitudinal issues.

“Broad environmental concerns can also be considered a feature of privilege, however. It may not always be a priority of disadvantaged groups because of their increased need to focus primarily on the difficulties encountered in their everyday lives and environments”– Fenney

The social hierarchies from general society transfer over to the environmental movement, but can feel much worse because of the narratives around embodiment. Assumptions about what disabled people can and can’t do, and are and aren’t interested in, are made unquestioningly in wider society and unfortunately are also found within the environmental movement.

In Fenney’s research, participants identified implicit ableism in campaign messages and materials, giving cycling as a key example. Cycling is often positioned as an alternative to car use but can be promoted in a way that focuses on physical fitness and ability as well as suggesting a moral superiority. Another participant raised the issues of requiring medication which is produced by big multinational companies and how this doesn’t work in the simplistic view of natural is good and unnatural is bad. Relying on medication also goes against a narrative of self sufficiency and independence.

“…the environmental movement is deeply attached to the notion of “the solitary retreat into nature as the primary source of an environmental ethic” … By implying that one must have a deep immersion experience of nature in order to understand nature, ecocritics create a situation in which some kinds of experiences can be interpreted as more valid than others, as granting a more accurate, intense, and authentic understanding of nature.”– Kafer

This emphasis on self sufficiency and solitary retreats erases the importance of interdependence that many people – disabled or not – rely on. We hear over and over again how we should be independent – every man is an island – and yet there are many environmental benefits to being an interconnected web instead of a lone off gridder. Of course, different things work for different people but from my corner of the world, there are huge benefits to most people of accepting interdependence as a model.

Even living the rural idyll has its disadvantages for some people with disabilities. If I had followed my teenager dream and moved to the middle of some fields in Wales, then I would struggle to have my care needs met, to have carers that I love and to have the access to the health system that I need. It wouldn’t be impossible, by living in a city I have more choices and more opportunities.

For some people, disability and conservation are irreconcilably mutually exclusive. This can be seen in the creation of accessible paths in natural reserves. There is this misunderstanding that in creating a certain kind of path or access, you will damage the natural environment. This ignores the fact that creating any access, even for able bodied people, has an impact. It has actually been found that some accessible access can actually be more protective. Instead of soil paths which erode and which mean people can wander off the path and damage the flora, raised boardwalks limit the damage, create sheltered environments under the path which can benefit certain species and mean that animals don’t have to risk crossing a path.

As well as the moral superiority found in some parts of the environmental movement, there can be a competitiveness to be the best at being green and this creates a hierarchy of sorts. Certain behaviours can be status enhancing and often these aren’t available to all. For example, being in the wilderness miles away from anything, being able to swim in wild water, getting off the literal beaten path, getting away from technology, the privilege of walking with feet in contact with the soil and so on.

Also on the hierarchy are things like not using straws to drink with – and not letting anyone else either, or at least not without an argument and intense justification. For some people it’s not easy to turn the heating down by a degree, or use public transport and “inaccessible solutions to environmental problems risk adding to disabled people’s exclusion from participation, as well as threatening the success of these solutions” (Fenney).

Ultimately, the environmental movement needs to consider any implicit or explicit exclusion because without a full spectrum of members, there will never be solutions which work for everyone. With people living longer, and with everyone at risk of becoming disabled, we need the environmental movement to work in an inclusive way or their goals will never be fully successful.

Since become disabled, my interaction with nature has changed. My last couple of blog posts have raised some of the issues that come with this but it has given me an opportunity to reframe how I interact and create new ways which give me a new intimacy.

There are subtle changes in weather which once were easily overlooked – throw on a coat, grab an umbrella and so on – but which now act as a backdrop for the play that is my life. Rain and electricity don’t mix well, so I have to be aware of this when I’m going out. The level of precipitation dictates where I go, how I get there and even if I can go out. Ice and snow and ungritted pavements go about as well as you can imagine. Then there is the effect of weather on my body itself. Warmth helps my pain levels, cold does the opposite and worst of all is when days are noticeably warmer than nights and my pain levels flare up. Hot days stresses out my autonomic system, making me feel faint, breathless and generally yukky.

The way that the weather plays out in my life, on my body, means I am much more aware of it than I once was, much more attuned to it and by extension to the changing of the seasons. I also find I am more aware of light levels, possibly in part because I tend to spend my morning drinking tea in the same seat. A seat which faces into the sun as it rises over the houses and then later in the day, it reaches me from the other side, through my kitchen window.

When I am outside, whether its considered wild or not, I struggle to lose myself in my environment in the way that many people speak of doing in the wilderness. It is not possible to engross yourself in the land around you if you are always scanning for roots and holes and puddles to avoid – this also doesn’t fit with the image of the romantic ideal of nature

“Detailed scanning of the environment is part of disability culture’s everyday adaptation and troubleshooting”– Elizabeth A Wheeler

There is, necessarily, a constant adjustment and awareness of the environment, a sensitivity and responsiveness to changes. In man made worlds, that might be an intimate knowledge of where the drop kerbs are, where the pavements get too narrow for a wheelchair or where the path is in need of repair. Take that same intense scanning into a more natural space and you will find the intimate relationship now becomes about roots and twigs and soil. This is not capital N Nature as some people see it, but this is personal and is another model for being in nature. One that often focuses on the smaller things in the landscape, and in doing so can mean you are attuned to other beautiful aspects such as fungi and leaves. Back in that man made world, I see the tenacious plants that weave through the cracks in pavements and the feathers that have floated down to the tarmac. It is a different experience, but different does not mean inferior.

“Disability narratives can widen the emotional repertoire of possible responses to nature”– Elizabeth A Wheeler

Another way in which I connect to nature in an intimate way is through the birds that visit my bird feeder. I have predominately house sparrow visitors and have been able to watch the parents rush back and forth taking food for their babies. I have seen those babies venture out to sit on the bush by the feeder, waited on by mum and dad until they are old enough to get food for themselves. One little baby pushed this and, even though I knew it could feed itself, still begged some mealworms from mum… Unless I had seen this family virtually everyday, I wouldn’t have known that was the case.

Aside, although I tend to call the sparrows my babies or the sparrow family, the correct name for a group of sparrows is a flock, but can also be called a knot, flutter, host or quarrel… I think my birds might be best described as a flutter…

Similarly, there is a single starling that has been visiting since it was a chick. I have no idea why it has ventured here alone but it’s been incredible watching it grow and develop it’s iconic starling markings. There have been a few scuffles between this starling and the sparrows but I’m pleased to say that in the last couple of months a peace agreement seems to have been made. Yes, it does seem like they both give each other sly glances and they aren’t going to be best friends any time soon but on the whole it makes for a much more serene experience. Except when the lone starling was joined by about thirty friends… It’s only happened on a couple of occasions but I did think that maybe the apocalypse had arrived… Thirty black birds descending on one small feeder less than a metre away from me, with only the window between us… The sparrows looked horrified – yes I may anthropomorphise my little babies – and because the starlings were just fighting for feeder real estate, none of them actually got any food anyway… On the last occasion, when the mob left the feeder vicinity, they joined a black cloud of other starlings and I was slightly concerned an entire murmuration might descend… thankfully they didn’t, I’m not sure the window would have stood up to that…

As well as being a great and accessible way to engage with nature, whatever the weather, bird feeders help people become more aware of their local wildlife and the types of birds that visit. Watching them eat means I’ve got to know the different beak shapes and the different ways they use them. Feeding birds has also been shown to change human behaviour, for example being more concerned about cats that visit the area or being more aware of a sudden increase in the number of birds.

“These human responses were in some cases tied to people’s emotions about their observations, particularly anger.”– Observations at bird feeders

If you’re thinking about getting a bird feeder, there are different options out there, some will work better than others for you and for different birds. I currently have two bird feeders, one which is a hanging feeder that is attached to the back fence and gets filled with fat balls, and one which is stuck to my living room window and is filled with mixed seed and mealworms (it took a while to find the food that my birds like, they’re surprisingly fussy…). I also have a couple of ceramic poppies which collect rain water, or can be filled with water in the summer. If you’re lucky and have some privacy in your bird feeder location, you could add a camera! I did research, it’s not ok for me to point a camera at my feeder because it takes in a large view of the pavement and street… boo!

Anyway, I hope that by touching on a couple of ways I engage with nature, I have made an argument that having a disability does not mean your interactions are inferior. I also want to make the point that more inclusive ways of engaging with nature are more accessible to people who might not go hiking or bird watching otherwise.

I will be talking primarily about access from a mobility perspective in this post because that is my main experience. There are so many ways in which health and disability can affect engagement with nature and I do hope to touch on that in another post. In the meantime, if you want to share your own experiences, please do so in the comments.

As I have discussed, there is a privilege with which many people view and experience nature. There is an unspoken assumption that nature means somewhere “out there”, away from humans, somewhere that could be described as wilderness. By creating that distance, we not only put ourselves outside of nature but we make it impossible for some people to engage with nature.

Immediately my mind goes to those of us who can’t walk, or who don’t navigate the world in the same way as the majority. Some of us require carefully cultivated paths which regulate our experience, inevitably some might say. But is that not because an able bodied world has determined that we don’t need the same access as others? That by adding a short circular route near an information centre the tick box exercise is complete. That we don’t need anything more. That being disabled is a uniform experience and thus we want a uniform way of being in the world, and by extension in nature.

Hidden and undiscovered or rarely used places – that tend to be less maintained and hence are less accessible – are often considered to be more natural than tarmacked or wooden decking paths. This means I cannot truly experience nature in the eyes of those people but I know that this isn’t true. I experience nature deeply in my own way, perhaps more so because of my disability and limitations. Of course, there are other reasons people may not be able to get off the beaten track including where they live, finances, transport, lack of information and so on. Race, gender and class all have roles to play as well and of course these barriers need to be broken down too.

Another common narrative about getting into nature is that of getting away from technology. If I am leaving my house, I have to either be pushed by a carer or go in my electric wheelchair, with the latter being much more comfortable and more independent. Technology is not antithetical to nature. Like everything in this world it’s about how we use it. Technology can help us to identify bird calls or trees, put names to the flowers we’re seeing and, in that way, can help to more deeply engage us with the nature we are experiencing. Taking photos with cameras and phones can help us see more closely and help us to slow down.

A third thread of the discussion around getting into nature is that of how easy and simple it is to go out in nature and how foolish we are if we don’t. Again, an example from my own life. Say I have found somewhere suitable to go and be in nature, somewhere accessible, with parking so we can take my wheelchair and not worry about the battery dying. Say all of those things are sorted and then it rains. Just a little rain, no big deal; the words of many people who think nature is easy. We whip out my wheelchair waterproof, wrangle it over me and the chair and in doing so I’ve got wet. Assuming no more water leaks in, which it always does, I will still get chilled and probably ill as a result. The same is true in winter, even on dry days – being in a wheelchair, not moving, means you feel so much colder than those around you and for many people with physical health issues, this has greater consequences.

This is to say nothing of all the mental work that goes into finding somewhere suitable to go in the first place. There is a dearth of information about accessible nature out there. It is improving but you can still get better information about where to go for a romantic stroll on the Yorkshire Wildlife Trust website than you can for wheelchair suitable walks. If you filter by the latter, you will get zero results, even though I know at least a few of their sites are wheelchair accessible…

But, despite all of this, there are some very easy ways to make the nature ‘out there’ more inclusive. Adding edges to the paths means visually impaired people who are using white canes can identify the borders of them more easily. Replacing locked gates with radar locks. Making kissing gates a little bigger. Even just providing all of this information online and through other methods helps immensely. Styles with spaces for guide dogs to walk under. Adding wooden board walks. Adding a ramp into a bird hide. Adding benches every so many metres and having a map to show where they are. Adding a gap into a cliff fence at wheelchair height. These are not difficult changes, they just require things to be done differently. Instead of repeating what has always been done, an open mind can come up with easy ways to make the nature ‘out there’ more accessible to everyone.

First, I know this will be a controversial topic. I found a thread on Twitter with many chronically ill people ripping the idea to shreds. So I want to be clear, this will not apply to many people who are chronically ill. However, I’ve known people where this has been the case and who often don’t see for themselves that this has happened.

So, what kick started the twitter thread, and this post, was a psychologist (I think) saying that for some chronically ill patients, their illness has become their identity. Not just something they identify with, but their entire identity. The person was saying that for these patients, engaging with the healthcare system to the degree that they do is not always helpful and can actually be harmful, physically or psychologically.

She went on to talk about using the twelve step program traditionally used for addiction to help this subset of patients and I don’t want to talk about that. I don’t know enough about the program and what I do know, doesn’t always sit well with me. But the issue that many chronically ill people were having wasn’t with the 12 step program, it was with the idea that what she was saying was basically patient blaming.

The initial tweet was followed by a number of versions of “I don’t want to be chronically ill, I don’t choose this” which I think is problematic in the context of addiction as addicts don’t chose addiction. But it’s also problematic because people are saying this doesn’t apply to me and therefore it must not be relevant to any chronically ill person. An overlooking of the fact that the psychologist was talking about a small number of chronically ill people. Chronic illness isn’t a unified group, for starters there are many different ways to be chronically ill and different people are at different stages of the psychological work that goes with being chronically ill.

After reading this twitter thread, I went on to do some research about the idea of illness as identity and much of it confirmed what I thought.

There are different ways people react to chronic illness and I’d like to point out that that doesn’t make for better or worse people. We all deal with things differently, based on our life experiences and personalities.

Visualization of the four illness identity constructs.The dot represents the heart disease and the circle represents identity. Illness Identity

Whilst the above diagram is focused on heart disease, the model works for chronic illness more broadly. There are four routes which patients tend to go down:

Engulfment

Rejection

Acceptance

Enrichment

And the patients that the psychologist was likely talking about were those who become engulfed by their illness.

“Engulfmentindicates the degree to which patients feel that their disease dominates their identity.These patients completely define themselves in terms of their disease.”– Illness Identity

This seems to me to be the group of people who spend vast amounts of time at the doctors or hospital when its not really necessary. Who call the doctors at the first sign of what is likely a “normal” issue- a sniffle, a cramp, extra fatigue- and who don’t consider that it could be a “normal ” issue or a response to something they’ve done. Or who only ever talk about their illness.

“When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His or her self-identity will then be formed around being a patient as he or she identifies with the sick role.”– Chronic Illness and Self-Identity

I know people who in theory want to do x,y,z but who use their illness as a way to avoid even attempting it. I’m talking here about things which are achievable within that person’s limits but which never get attempted because of the way that illness is consuming them.

I’ve known people who’ve had surgery after surgery for an issue that surgery will not cure. I’m talking here about 20 surgeries on the same joint even though all the literature advises against any surgery. This life then becomes about surgery, being a patient, recovering and repeat. It seems to be reasonably clear that something else is going on here. That the person is using surgery to try and meet some need, whether that’s the hope of a miracle or the attention and care that comes with the cycle. These are valid needs but there are other ways of meeting them.

On the other hand, I know people who vehemently push against their illness, pretending it isn’t there and that has its own issues.

“Another construct pertaining to illness identity isrejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self. Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.”– Illness Identity

I think most of us go through stages where we dip in and out of the different categories and that is ok, our health changes, our life changes. And of course having a chronic illness is likely to affect how you think about yourself, how you see yourself and your identity but everyone is more than their illness. An ideal end point, especially if there is no known cure for your chronic illness, is acceptance. This is not about denying the illness but about trying to live your life with your illness. Acceptance gives you resilience, adaptability and a better quality of life.

“Although it is a constant process, one that is never completed,individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity… when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable.”– Chronic Illness and Self-Identity

And on a final note, I have ehlers danlos syndrome, I am not ehlers danlos syndrome. I am Helen. I am a writer. I am an artist, a friend, a reader and so on.

An adaptor which turns your wheelchair into a phone charger. I have a short, multi ended charger plugged into mine so that I can charge any of my devices, my friends and my carers should the need arise. It works when the chair is turned off as well as when it’s in use.

Small wheelchair charger. Most wheelchair chargers are big and clunky and not very portable but you can get some which are more reasonably sized and I have one of these in my wheelchair bag at all times, just in case!

Period pants, which I love so much I wrote a whole blog post about them…

Now I have my wheelchair vehicle – another thing that makes my life easier! – I am going out and about in my electric wheelchair a lot more which is so much better. However, it is bigger and doesn’t let me get under tables very well which is annoying when I’m at courses and want to write notes or rest the handouts on the table. So I got a Trabasack wheelchair tray, in purple of course. Mine is the curve connect and it hangs on the back of my wheelchair but then when I need it, it fits snugly on my lap and has a zip pocket so I can pop my tablet in there.

My tablet is also an essential. I go for the lightest reasonably priced one and when I needed a new one, this happened to be the Samsung S5e. I also got the keyboard and a stylus. I also have a pen holder which is designed for books and basically is a piece of elastic that handily slides round my keyboard cover so my stylus is always to hand. Unfortunately I cannot seem to find what I mean online…

As winter is approaching, I’m using my wheelchair cosy and waterproof a lot more… For added warmth I also tend to add blankets under the cosy and if it’s really cold, then an electric hot water bottle. If it’s really really cold, then I’ll also pop a couple of hotrox in my shoes… Heat packs are also handy for warmth and soothing angry body parts.

If you aren’t as obsessed with being warm as me, then you may want to have some cool packs in your house… There are ones which turn into ice packs on opening which are useful for out and about and we also wrap small freezer blocks in a tea towel.

Actually, that reminds me, in the summer wheelchairs can get very sweaty… They tend to be black and tend to be made from plastic-y fabric. This meant that on one of the first really hot days this year, I ended up with my back drenched in sweat… And kept burning myself on my wheelchair. We got round this by using a thin cotton blanket which we draped over as much of the chair as we could.

Talking of out and about… I have a wheelchair bag which aren’t known for being exciting so I have covered mine in patches and badges. In it are the usual things like keys and a phone but also sachets of calpol, my medication paraphernalia, heat packs, ice packs, reusable straws in a totally strawsome straw pouch and a spoon with a moulded handle that I can use more easily. There’s also a 4Head stick which I use for headaches but also find it can help relieve muscle tension when my joints get angry. And also a few sachets of salt in case I feel POTsy when I’m out and about.

Back in my flat, I have a wonderful mattress (mine is a mammoth one but mattresses are very personal) and a very specific to me bed arrangement. I have two maternity pillows which help to position my upper body, a leg raiser to support the lower half and a duvet raiser tent like thing which stops the duvet from bending my feet. The latter is good but I found that it was causing a draft as the duvet wasn’t long enough to drape over the end so I have covered it with a blanket, secured by pegs. I also found that it would sometimes fall off the end of the bed so I got a kids bed rail and popped it at the foot end of the mattress. Problem solved.

And just a few odds and ends that I wanted to mention:

baby toothbrush wipes so I can sort of clean my own teeth – I don’t like things in my mouth so it’s very hard for my carers to clean them well…

a cup holder which is designed for prams and pushchairs but which also attaches to my wheelchair and is perfect for popping my phone or keys in

peg boxes are great for carrying around the bits and pieces I need with me in my flat – phone, door opener, postit notes, 4head stick, nail file etc. It means that I don’t have to remember to move them from room to room and I don’t need my carers to get anything I’ve forgotten.

a massager… I got this from Naidex and I love it. Mine is a Truviv one and I’ve found it really helps when my shoulders are tight. I do have to be careful because of my joints so I always use it on the slower speed and not for too long at a time. Just something to think about if you have EDS.

a back rest for my manual wheelchair. This actually came free with my massager and is probably not designed for wheelchair specific use but it fits perfectly and makes the chair a lot more comfortable.

Recently I was thinking about the role of my carers and the pros and cons of their jobs and having spoken with them, the pros and cons weren’t necessarily the obvious ones.

There are some very obvious pros, for example going to the theatre with me, going on days out, going on holiday… All of these things are something I need assistance with and therefore a carer gets paid to go with me. When we aren’t out and about, we’re normally at home watching netflix or youtube and I choose what to watch based on who’s on shift with me. I’m great friends with my care team and that has to be a pro… at least I hope so!

When it comes to the cons, you might expect somebody to say emptying the commode, showering me or washing my period pants. You might think it’s hard having someone ask you to do something every few minutes or having to anticipate someone’s needs. To be a third wheel at times or having to go to things and places that you don’t want to.

But the reality is, having spoken to my carers, the things that they see as cons are dealing with spiders and coping with my nightmare neighbours. Starting work at 8.30 was also mentioned with the caveat that this would also be the case for most jobs so isn’t care specific! This morning I did not want to wake up, but I have to get up by a certain point to have my medication, and my carer hated having to interrupt my dreams. In a similar vein, it’s hard for them to see me anguish over asking for help on bad days for things I can cope with on better days, and watching me suffer with pain when there’s nothing else that can be done.

Essentially, the harder bits of my care are because my team are empathetic, kind and caring people who find it hard to see another person suffering.

Of course, this isn’t the reality for many carers who are overworked, underpaid and expected to see numerous clients in one day. I am lucky in that I have a small care team who work with one or two clients and so we are able to build that relationship which is important.

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.